With the benefit of hindsight, I now realise my slow decline into Addison’s disease began two, if not three, years ago. It started simply with feeling a bit run down for a few months, nothing specific, just generally lethargic.
Then I developed a stubborn diarrhoea ‘bug’. My GP arranged tests to see if it was a bacterial infection but these came back negative and it was, therefore, presumed to be viral. The diarrhoea continued for three long weeks, during which I also had a bout of vomiting. Most of this time I spent in bed feeling pretty lousy. Blood tests showed my sodium was low but this was to be expected in cases of prolonged stomach problems.
After three weeks, I went back to work hoping to feel fully fit again quite soon. Instead I continued to feel very run down. I had been diagnosed with an underactive thyroid the previous year so asked for my thyroid hormone levels to be checked in case it was just a case of tweaking my meds, but the results showed normal parameters.
Further bouts of diarrhoea followed with almost predictable regularity, each lasting for 1–2 weeks, each making me feel dreadful. I also had an excess of stomach acid, which caused vomiting. My GP prescribed omeprazole, which decreases stomach acid levels (it also has a sodium-lowering side effect, although I didn’t realise the significance of this at the time). At one point, I was just so poorly my husband took me to A&E. The triage nurse told me that stomach bugs should be dealt with at home with GP help. She said they were very busy but would try to fit me in. I sat in the waiting room for nearly three hours, still with diarrhoea and vomiting, until I was exhausted and asked my husband to take me home.
After this unsuccessful trip, my GP ran more blood tests and phoned me at home with the results to make sure I was OK. My sodium level was 122 mEq/L (normal range is around 135–145mEq/L). I saw her again a couple of days later and she commented how tanned I was. I hadn’t been abroad and didn’t sit in the sun much; the tan seemed to happen by simply being outdoors. She referred me to an endocrinologist at the nearest hospital, suspecting that I had Addison’s. The blood test requested prior to my outpatient’s appointment showed a sodium level of 125mEq/L, but I was in his consulting room less than five minutes and dismissed as someone who ‘just runs with low sodium’.
So, having been told there was nothing wrong, I carried on as best I could. I had to go back to my GP for regular blood tests; my sodium was usually 124/125mEq/L. My stomach problems continued but, unless I was actually vomiting, my appetite was not affected. In fact, I ate like a horse a lot of the time, though my weight remained static. The only noticeable dietary difference was my craving for salt.
The effect on my life
By now, I was having real concentration issues. I worked in accounts, a lot of which was fairly complicated and mistakes were creeping in. I struggled with the names of people I had worked with for years. Actually, I struggled with words generally. Half the time I couldn’t construct a sentence without making mistakes – I would think one thing and say something else. Then, just for good measure, the company announced all accounts work was being transferred to India and we were being made redundant. The Indian team came over for six weeks and I had to train my successor, explaining every aspect of my work. Those six weeks were absolutely draining, but I worked part-time, so as soon as I got home mid-afternoon I could curl up on the settee for a nap. It wasn’t unusual to me to still be asleep when my husband came home from work. I could sleep all afternoon, doze off in the evening, sleep like the dead all night and still wake up tired.
I went from someone who loves to cook and make meals healthily from scratch to someone who found it an effort just to put some frozen chips in the oven! Bless him, my husband never complained. Special days with my beloved grandchildren were more often than not cancelled because I was unwell and I had to tell my daughter I could no longer cope with looking after them one day a week because of the constant stomach upset. I think this was my lowest point – my two little granddaughters are very special to me.
In December 2014, I had more problems with excessive stomach acid. I was prescribed omeprazole again while waiting for a gastroscopy, the result of which was reassuringly normal.
The crunch finally came in February 2015, by which time I had taken early retirement, only made possible via the redundancy package. It was a Monday and I fell into bed exhausted as usual and went to sleep the minute my head hit the pillow. I came to 36 hours later in intensive care. I had gone into an adrenal crisis overnight. When my husband woke on Tuesday morning, I was pretty unresponsive and he thought I’d had a stroke. I was taken to the nearest hospital, where blood tests showed dangerously low sodium. They put me on a drip and blue-lighted me to a much bigger hospital. My sodium on arrival there was 99mEq/L and it continued to fall to 97mEq/L. My husband was warned that I may not survive and told to expect seizures and life support was put on standby.
I was so, so lucky. I didn’t have any seizures; I survived unscathed although the hospital specialist told me he had never seen anyone survive with a lower sodium level. I spent four days in intensive care, but remember very little of this. I then spent a further seven days in the endocrinology ward. I was given IV hydrocortisone for the first 2–3 days via arterial cannulas stitched into both wrists and a drip for seven days. I was also catheterised for seven days, until they considered I was safe standing, with a frame and a nurse close by. My legs were like jelly the first few times I got out of bed and I completely collapsed once. I also had uncontrollable jerky tremors in my arms – eating and brushing my teeth was quite an experience! During my stay, I had two MRI scans, which were clear, and a short Synacthen test, which completely flat-lined. A pituitary function blood test was carried out a couple of days after my discharge. This was followed later with a CT scan on my adrenals and a bone density scan. My sodium was 130mEq/L on discharge from hospital, and now sits at around 134mEq/L.
The road to recovery
Seven months after being diagnosed with primary Addison’s, I am more or less back to normal, if a little frayed around the edges. I don’t have the same energy levels I had before all this started and I know there are likely to be some bumpy times ahead, but we recently had a weekend away with our daughter and her family. I wasn’t sure how I would manage, on the go with two very boisterous little girls, but I coped fine, had a brilliant time and finally felt like me again.
A post script
When I wrote my story for the ADSHG newsletter, the editorial team encouraged me to send a copy to the endocrinologist who had failed to diagnose me, to make him aware of his error. He wrote back with an apology, explaining that he had been under intense workload pressure and fighting for more staff resources for his unit at the time, which had clouded his judgement. He said he had relied on a random cortisol blood test, that I had not been aware was done by the GP. His hospital protocol apparently said it was not necessary to do a Synacthen test in anyone with a random cortisol above 150nmol. Mine was 270nmol. He has asked my permission to use this misdiagnosis story in a forthcoming conference presentation about how medical errors arise.
The doctor’s view
Many ADSHG members will recognise the symptoms of Addison’s described here.
What they may not know is that a low sodium level is an important clue that undiagnosed Addison’s might be present. However, really any doctor should be aware of this and should know what to do about it (usually refer to an endocrinologist unless some other obvious cause is present) – so that such a long delay in diagnosis after symptoms began and a low sodium was identified is really inexcusable.
I don’t know exactly how old Sue is – but the fact that she took early retirement during this story tells us more or less – so from my perspective, she is ‘young’ and no one should dismiss a low sodium as ‘just one of those things’.
From my point of view, she needed investigation and a diagnosis from the point where the sodium level in her blood was first found to be low. It might have been very reasonable to say ‘maybe it’s caused by your vomiting – let’s repeat next week and see if it’s back to normal’, but investigation was certainly needed as soon as the level was repeated and found to be still abnormal and/or when the same symptoms recurred.
However, eventually the GP did put all the pieces together and queried the correct diagnosis – and the so-called ‘specialist’ assessment at that stage really does seem insufficient. I just hope that it wasn’t actually a properly-qualified endocrinologist who gave the opinion. Firstly, if the consultation was really only five minutes, then I don’t think that is long enough for an adequate medical assessment. I always allowed 45 minutes for any new patient and have always found it difficult to get someone in and out of the door in five minutes even when I know their case well!
Secondly, with the story of a combination of low blood sodium, a previously diagnosed underactive thyroid and increased skin pigmentation, she would not have left my clinic on that first visit without having had the Synacthen test performed. We might even have asked her to sit around for an hour or two until the lab reported the result urgently – or started treatment pending the result. Thirdly, although there are indeed many other causes of a low sodium, at this sort of age you can’t say someone is ‘just running a low sodium’ without formally excluding important treatable causes, and one of those causes is Addison’s.
Addison’s is not the only cause of a low sodium – and not even the most common cause – but it is one of the most treatable. Other causes include some cancers (particularly lung), some other chronic chest diseases, various problems inside the brain (including tumours), certain medications (eg some diuretics and anti-epileptic drugs), an underactive thyroid and severe losses of salt and fluid associated with vomiting and diarrhoea. Often none of these are found on investigation – and we then often end up with a diagnosis that it is a problem with the function of the body’s mechanisms which regulate sodium levels (so-called SIADH).
Minimum investigation of an otherwise well person with a low sodium (and with no immediately obvious cause from the above list) would therefore include thyroid blood tests and a 9am cortisol level and/or Synacthen test – as well as chest X-rays and typically proceeding to a CT or MRI scan of head and chest and abdomen if no cause has been identified.
A low sodium is actually a very common finding in very frail elderly people – particularly during other acute illness and in those who require long-term nursing care or who are bed-bound – and in such a case if the sodium abnormality was relatively mild, then we might choose not to put someone through the rigours of all of these detailed investigations. However, in someone of working age who was otherwise previously well, there is really no excuse for failure to investigate promptly.
I am glad that Sue is now finally getting back to her normal self.
Dr Trevor Howlett
Emeritus Consultant Endocrinologist
Leicester Royal Infirmary
This article was first published in the March 2016 edition of the ADSHG newsletter.